Next steps…

If I want a life, at least over the next year or so, I need a power-chair. This is not what I want. I don’t want Ehlers-Danlos Syndrome but I’m stuck with it. My diagnosis took so long that my muscles have wasted away. This alone would be a problem for most people but it’s particularly problematic for me because I rely on my muscles to hold my hypermobile joints in place as my collagen has decided that it’s not going to be responsible for that. Normally the treatment for my condition would involve various pain killers and physiotherapy. My treatment is especially tricky due to my severe drug intolerances. It’s nigh-on impossible to regularly manage physiotherapy for a connective tissue disorder without effective pain relief – especially when it’d take months and even years to see a result. I can hardly manage basic daily activities without crippling pain. Activity is all about pacing with a chronic illness. The idea is that you should be able to carry out the same activities on day two as you did on day one without feeling terrible. What happens when getting up, dressed and eating 3 meals is too much? You sit about in agony, sleep (because that’s the only time it doesn’t hurt) and literally waste away for a week or two. You’re miserable because your house is a mess but when you empty the dishwasher and do a load of washing, it wipes you out for a week and you get a lecture about pacing from your specialist. It’s horrendous. On top of that, you are diagnosed as being allergic to EVERYTHING and get super helpful information from immunology about how to keep dust and pollen levels down in your house – except this conflicts with the fact that if you do any of this cleaning malarkey, you end up bedridden. Being stuck inside literally makes me even more ill.

I want to go back to work in the semi-near future having been off for a year. I don’t want my EDS to take over my entire life and I’m starting to feel it slipping away. Except, without help I don’t think I’ll manage to get back to work. Not in a month of Sundays would I be able to walk to work and back on a bad day, never mind spend a day walking about and on my feet. So, I’m working on the basis that a power-chair would dramatically reduce the stress I put on my joints and muscles. I am hopeful that it’d allow me to get back to work – because being on benefits sucks when you don’t match the tick-box criteria to get any realistic amount of money. I also don’t match the tick-box criteria of being able to get a chair on the NHS, despite their super slow diagnosis being part of the reason I’m in such a pickle. The DWP and the NHS are both government funded and I’m pretty sure that providing me with a wheelchair and therefore means to work and come off of benefits would be far more cost effective for them in the long run, but what the hell do I know?

Do they come in anything sparkly…?

I don’t know how the hell I’m going to afford a chair. I am going to rent a scooter to get out and about for a couple of weeks to see if that makes a difference to my overall health. You can only rent them short term so while it’s not going to help me get back to work, it will probably give me a pretty good idea of how much it will affect my ability to be a functioning human. Fingers crossed. If anyone knows a kind millionaire who would like to chuck a couple of grand my way for a chair…

Ren x


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